Lots of New Baby Info

Last Friday morning we put Samira on the school bus, then bundled up the baby, pulled out our umbrellas against the rain and headed to our long-awaited appointment at Children's Hospital. My first impression came after we had found parking and wound our way into the waiting room for the Development Center. I was filled with gratitude for life. CHOP has that effect on me. I can be fussing my way through life, frustrated at the health challenges that our family faces and silently glaring at friends whose kids are healthy and fine. When I get there, the feeling turns around. I am profoundly glad that my baby doesn't have cancer. That she doesn't have a regressive metabolic disease like Canavan's that will kill her, or pull her into an interiority that makes autism look friendly. That she can breath without an oxygen tank.

One of the kids in the waiting room was deaf, and had two very large hearing aids. Her mother was signing to her. I wondered how in my schedule I would fit in the time it takes to learn sign language, were my baby deaf.

It puts our challenges in perspective. It doesn't make them go away, and it doesn't minimalize them, but it puts them into perspective.

Amelia was evaluated for two hours by a developmental pediatrician. We got the inside scoop on why it's so hard to get an appointment. Seems there's so much suspicion of autism these days that many families will have their kids evaluated just to make sure, to reassure the parents. That's from the doctor's mouth. Doesn't explain why they don't hire more doctors, but it did help to get an explanation. Amelia had to pull a red toy, find blocks hidden under a napkin. She had to put increasingly small objects into ever-more-narrow bottles. We even had a CSI moment where the lights were turned off and the doctor used a very cool black light to examine the baby's body. By that time I was too tired to ask why and for what, I was just happy that nothing other than random, soap-fleck related spots turned up.

Final analysis: the baby is fine cognitively. She definitely has muscle delays, and poor muscle tone: hypotonia. The good news is hypotonia can have benign, unknowable causes. Also good is that Amelia doesn't seem to be as hypotonic as babies can be. She could be much floppier, it turns out, and have a longer road to travel toward health. The bad news is the doctor wants us to follow up at the neuro-muscular clinic, just to make sure that her condition isn't s symptom of any other disease.

There's much relief in our family. We still wonder whether there's an underlying cause, and it will take some time to learn that. We still can learn that something terrible has happened. The baby's on the road to improvement, though. Her occupational therapy started yesterday and her physical therapy starts later this week (we'll just call her Therapy Baby from now on). I know it will be a slow and steady process of helping her build strength, despite having low tone muscles that don't take easily to strength-building.

At least at this point she has conditions, and not diseases. That's a distinction that matters.

Resources for stressed-out parents of babies-with-challenges, anyone? I can't believe I've gone through eight years of being a parent without really getting what it's like when your baby isn't healthy and well.

The best news of all: Amelia is happy and sweet and smiles and plays with toys. I hope she never has a sense of any of this, and that we, her parents, can keep calm enough so that she has no idea of the stress we've experienced.

Hug the children close.